My Voice

Over the years I have learned I am not a verbal processor.  I don't share my feelings often or easily.   It feels scary, and I don't like scary.   It feels disorganized, and I find comfort in organization.  It feels vulnerable and I have more scars than I wanted.   So over the past few years I have found my voice in writing.   In writing I process.  In writing I feel.  In writing I organize.  It brings me comfort, understanding, and peace.  So here, on National Prematurity Day, just over one year later, I write:

I write about the guilt. It is still heavy, and I still feel like I failed you.
I write about the grieving.  I get stronger, but it doesn't go away.  
I write about what I was so thankful for.  Not everyone has friends, at least friends like we had.  
I write about what I remember and what I wish I could forget.
I write to say I'm sorry.  I don't know what I could have changed, but like any mother, if I knew what I could have done differently I would have.
I write because it still hurts.  It hurt to see you struggle to breath, to choke over and over again learning how to eat before you were ready, to see you turn blue because you forgot to breath.
I write because I feel responsible.  For every specialist, test, or even weight check that brought tears and fear ... I feel responsible.
I write because I'm jealous ... jealous of people with normal birth experiences.
I write to remember the precious moments I had with just you.  The moments I closed my eyes, felt you skin to skin, and imagined you were safe inside my body.
I write so others will give me grace when I'm a little crazy and over protective: Welcome to our home, go wash your hands.
I write so other moms know they aren't alone.  The NICU is the busiest, most lonely and isolated place I have been.
I write so others will be aware.  Aware of the roller coaster that is the NICU.

But most of all, I write that I would do it all again.   I would do it all again to fight for every extra day, or even hour inside of me.   I write to say I love you.

(a video a friend so kindly made us with some of our pictures the first few months - thank you Rachel ... I watch it over and over again!)

Dear Little Four ...

Your name means 'my heart', but I had no idea how fitting that name would be when we picked it for you just 2 months before you were born.   It amazes me that just one year ago I was just reaching my 25 week of pregnancy and feeling an unusual sense of relief; now the doctors had a shot at saving your life if (but in my heart I knew it was really when) you came early.

These past few weeks (that are leading up to your first birthday) have been filled with more nostalgia and bitter sweet emotion than I am used to.     Some days I am overwhelmed with memories of the anxiety, contraction after contraction, pain filled last 14 few weeks of your pregnancy.   I think that deep down I knew, since that first check up where they couldn't find your heartbeat, that something ... something was different.   I should have prepared myself to let go of my expectations of a 'normal' delivery; but with my last baby, I so desperately wanted one drama free, trauma free, normal baby experience.    I wanted a fear free labor and delivery, and to go home with my plump sweet little boy in my arms.

I did not want to discuss your potential life threatening complications and chances of survival with all the specialists in between my contractions while waiting for your daddy to get to Boston.    I did not want to weigh the pros and cons of letting labor continue while the chances of life threatening infections for myself increased with every contraction that passed.   I did not want to remind the doctors I had three more children at home that I needed to live for, because as those words came out of my mouth I was sick with guilt.   My body was failing us both.    I needed you inside of me, and you needed to be there.  But even with the best, and most miserable drugs available, my body would not cooperate.    I wanted to give you what I gave your siblings: the best possible start to life.

I wanted to hold you after you were born.   I wanted to smell your newborn scent and hear your newborn sounds, but you can't do that in the NICU plastic box.   I wanted to figure out who you looked like; were you more me or your daddy?   I wanted to show you off to our friends and family, but you can't do that hooked up to all your leads, tubes, breathing devices and IVs.   I wanted to bring you home with me when I left the hospital.  I wanted to wake up every couple of hours to a hungry crying baby in the middle of the night.   I wanted to get nothing done during the days because newborns take a lot of time, but you wouldn't have lived if I took you out of your plastic womb.

Instead, I was wheeled up to the NICU floor hours after you were pulled out of me.   I waited days to hold you.   It was days before I could even really tell what your face looked like with all the tubes.  I had a crash course in brain bleeds, oxygen levels, CPAP, feeding tubes, residuals, bradycardia, and the metric system by your team of doctors.    I sat and cried with the nurses and your daddy.    As a woman and mother, I felt like a failure.   You weren't supposed to start like this.   My heart hurt for you, and I was fragile.   One small move and I thought everything would fall down around me.

It has been almost a year now.   We have had more hospital stays, doctor visits, tests, quarantines, and specialists than I was prepared for.   Even though I feel a huge sense of relief at almost making it through your first year of life, I still don't feel like I can exhale.   I still feel traumatized, scared and guilty.    I still vividly remember the sounds, smell and feel of the NICU.   The awful beeping and alarms.   The long walk down the hallway to the elevator.   And the 'T' in the hallway as you walked off the elevator.   Your daddy and I went right, towards the locked down, monitored, parent eating and waiting lounge of the NICU; while other parents and friends got to turn left ... to the normal maternity wing.

I may still be grieving the circumstances of your birth, but you are my hero, little four.   My strong, little rockstar, and I pray we get to celebrate many many more birthdays with you.